Justina Bonilla

@justinab | contributor
Justina is a freelance writer, administrative assistant, and caregiver to her younger autistic brother. 
Justina Bonilla

John Oliver’s Analyzes Bias in Medicine on 'Last Week Tonight'

On the August 18 episode of “Last Week Tonight with John Oliver,” satirist John Oliver discussed the impact bias in medicine can have on people seeking medical care. He went into detail about how gender and/or race can impact a person’s access to appropriate health care and treatment. John emphasized how, for many, these biases can be the difference between life and death. According to the April 24, 2012 article from The Wall Street Journal featured on the show, “women [were] seven times more likely to be misdiagnosed… and sent home from the hospital…” for a heart attack. Women are perceived by many as being chronic complainers, thus their situation is not taken seriously. A textbook for nurses, which was only pulled out of circulation just two years ago, was also featured on the show due to its bluntly inaccurate racial/ethnic misconceptions of how non-White patients identify pain. This “information” could reinforce inaccurate perceptions of ethnic patients, making it difficult for them to get a proper diagnosis. At the end of the episode, with the help from comedic legends Wanda Sykes and Larry David,John included a list of steps the medical industry could take to combat bias in medicine, including: Standardized care Having doctors and medical students taking non-bias training Having more diversity in the medical field And, most importantly, emphasized patients to advocate for themselves. As a female Mexican-American, I’ve experienced this bias first hand, especially in regards to my fibromyalgia. During an initial consultation by a top pain specialist in our area, he told me I didn’t appear to have fibromyalgia, despite several confirmed diagnoses, because I was not on heavy pain killers (I’m severely allergic to prescription and over the counter pain killers). Also, my back pain was a combined result of puberty “growing pains” and my heavy menstrual cycles. I was just exaggerating the pain to get out of school. His only recommendation was counseling for my “hypochondria.” On another occasion, a middle school nurse implied bias against my Mexican immigrant mother, asking Mom if my medications in the health office were “from Mexico.” My family were patients of a local and prominent integrative doctor, an MD who is educated and licensed to practice a combination of mainstream and holistic medicine. While the “medications from Mexico” were holistic pain and acid reflux medications from France (with “Made in France” on the bottles), without consulting my doctor to verify the medications, she called Social Services claiming that my parents were poisoning my brothers and I with unregulated and possibly illegal medicines from Mexico. Thankfully, with the help of our attorney, the credibility of our doctor and extensive medical records, we verified our situation and Social Services closed the case, finding no abuse. As for the nurse, she was not at the school the following school year. Today, I have a small team of doctors/medical professionals who I trust. However, I still see bias affect my health care, especially if I have to go to new doctors/medical professionals. Consequently, if I have to go to a new doctor, I take my medical documentation, verifying my health issues. On the rare occasion I must go to ER, I go with some else to help advocate for me if I’m too ill to help myself so I don’t suffer from a negative consequence due to a doctor’s potential bias. Better safe than sorry. Mr. Oliver, thank you for discussing and bringing to light this constantly overlooked, very uncomfortable and heartbreaking reality many patients, including myself, face in the medical system. It’s important to note there has been critiques and/or criticisms about this episode after he pointed to medical issues that are more common in some groups. For example, Native Americans and African Americans are more likely to have diabetes than Non-Hispanic White Americans and Asian Americans. However, I believe these critics are missing the overall message. If there is bias on the end of the medical provider, it increases the chance of misdiagnosis, mistreatment and lethal consequences for a significant portion of the population. And that is both the point of the segment and the call to action to fix it. You can watch the episode below:

Nicole Gray

Tips for Dating With Allergies and Anaphylaxis

Being a young person can be extremely difficult at the best of times. You’re finding yourself as a person and exploring new possibilities. One of these is meeting someone you like and possibly starting to go out on dates with them and getting into a relationship with them. This can be a challenging experience for any young person; however living with food allergies and anaphylaxis often complicates things. It can be difficult to get the other person to understand how your condition affects you and the implications it may have. You also may not want to seem different so you may lie about having your condition or downplay the seriousness of the condition. Most young people wouldn’t think twice about having peanut butter on toast for breakfast or having a Reese’s Pieces as a snack. However, for someone who has a severe allergy to tree nuts or peanuts, this simple snack will pose severe problems. The first thing I will say is it’s important to let the other person know about your allergies. This can be an extremely difficult thing to do. When you want someone to like you, often you don’t want them to think of you as “weird” or “strange.” You want them to see you like anyone else your age. You don’t have to tell them all the specifics of your condition, but at least cover the basics. 1. Let the person know about your allergies. As described above, this can become a challenge; however, it is a very essential thing to do. You need to let them know about the foods you are allergic to so the person can try their best to avoid things. Let them know about things that may have your allergy in it. This may seem patronizing as it’s common sense to know that peanut butter contains peanuts, but some things are not so obvious. 2. Tell the person to some degree what happens if you come into contact with something you’re allergic to. You don’t have to tell them about your experiences of being in the hospital with your allergies, but letting them know how your condition affects you is a step in the right direction. Let them know that your allergy is a severe condition. Tell them about the symptoms you get from your allergy. Being honest with them is a very vital thing to do. Don’t downplay the severity of things as this can make the person more inclined to ignore your warnings. Sometimes people think you’re exaggerating when you say “my condition is life-threatening”; however it is something that is imperative you do. Let them know the implications for you coming into contact with what you’re allergic to. Maybe tell them that if you do have something you can’t have then you will need to go to the hospital. 3. Tell them about your EpiPen. This can seem like a very daunting thing to explain to someone. I’ve had both good and bad experiences regarding showing someone my EpiPen. I had someone say to me, “You’ve got to stick a needle in your leg!” while I’ve also had someone say, “That’s pretty cool.” Explain to them that if you do have a reaction you will need to administer your EpiPen. Sometimes it’s even a good idea to get a trainer EpiPen off your doctor (places like the Anaphylaxis Campaign also supply them) and show them how to use it so the process doesn’t seem so daunting if it were to happen that you have to use it. Tell them what to do in the case of needing to use an EpiPen (calling 999 in the UK, etc.). 4. Pre-plan your dates with them. Think about where you’re going beforehand. This ensures that if you were going to an eating place you can check the allergen advice beforehand. Lots of eating places now publish their allergen advice online as well as having it available when you get there. Make sure to take into consideration that often eating places cannot completely guarantee the lack of cross-contamination where your allergy is concerned. Suggest places which you know are safe for you to go to. 5. Carry all medication with you. It can sometimes be difficult to feel different from all your peers and those surrounding you; however, it’s vital to make sure you take all your medication with you on a date. Hopefully nothing will happen while you’re with the person but you need to be safe in case of a situation where you do need your medication. 6. Wear medical awareness jewelry. Something I’ve found very useful is my medic alert bracelet. You can get these of websites such as MedicAlert or Allermates. These often come with very good wallet/purse cards which give information on what medical conditions you have and a number to call if anything were to happen. These can be very useful for medical staff when assessing your condition and can help speak in an emergency situation when you cannot. 7. Have a clear emergency contact written in your phone. Nowadays people have the contact ICE written in their phone. This is the “in case of emergency” contact, so the person you would want contacted if an emergency did occur. Have it clearly labeled on your phone who your emergency contact is so they can be contacted if need be. Some people have stickers on the back of their phone explaining who to call if anything were to happen and this can often be a good idea. 8. Don’t kiss someone unless you know what they’ve been eating. If you have any doubts as to what someone has consumed, do not risk kissing them. It is a common misconception that the person has to eat the allergen to have a reaction but in a lot of patients this is not the case as the protein, the thing that causes the allergen, can be transferred from mouth-to-mouth contact. When people get older and start going on nights out to clubs and pubs and such, often they will kiss someone whom they have never met before and know nothing about. This is best avoided if you have a life-threatening allergy, or an allergy of any sort, as you have absolutely no idea what the person has come into contact with. It is not worth risking your health over!

Justina Bonilla

Trick-or-Treating Alternatives for Food Allergy Families on Halloween

Every year, families who have children with food allergies find it challenging to take their children trick-or-treating. The majority of Halloween treats contain common allergens, which can have life-threatening consequences for children with food allergies. While there is an increase in the use of teal pumpkins and giving out allergy-friendly treats, there is still a growing number of children being diagnosed with food allergies and sensitivities every year. Here are some allergy-friendly ideas to make Halloween more fun, less stressful and even a little spooky if your child has food allergies. Local Events: Most cities and counties will have local events either before or on Halloween. Look online to see what events are available in your area. Some events include Halloween-themed storytime at the library, the zoo, park events, local carnival and autumn festivals, hayrides, costume parades, pumpkin patches and church autumn festivals. (Local churches also may have Halloween alternative events, which are usually open tonon-congregation members.) All-Ages Family Events: Around and on holidays, many places have special events for families. If you are interested in going to one of these places this Halloween, make sure you RSVP or buy your tickets ahead of time. These places usually sell out or quickly book up. Some places to visit include amusement parks, bowling alleys, children’s museums, miniature golf, professional sports games, arcades, craft stores, the movie theater and the mall. (While some malls have shops that give out candy, others have arts and crafts for small children. Check their online site to see what they offer.) Family Events for Older Children: Ideas for what to do with older children include: haunted houses, corn mazes, escape rooms, arcades, laser tag, go-karting, indoor sports (rock climbing, hockey, etc.), live shows (concerts, plays, stand-up comedy, etc.), haunted house tours and movies at the local graveyard. At-Home Activities: There are many activities you can do with family and friends in the comfort of your own home. A few ideas include: creating a treasure hunt, throwing a Halloween party, hosting a movie or TV show marathon, building toy sets (cars, stuffed animals, Lego, etc.), telling Halloween stories and having family game night. Trick-or-Treating Games: If your child is set on trick-or-treating, turn it into a fun game. For all games, let your child gather candy, with allergy-friendly treats in another bag. Then, your child can trade candy for a prize. Prizes can be anything from a toy, book, game, or a t-shirt. Here are a few game ideas, which you can adapt for your child’s needs: Game #1: Candy Weigh-in When your children get home, weigh the candy they can’t eat. For the weight of the candy, they will get a mystery prize. You can create a prize scale based on the weight of the candy. For example, candy under a pound can get a prize at or under $10.00, candy weighing between 1-2 pounds can get a prize between $10-$20 or whatever your budget allows. Game #2: Trick-or-Treat Bingo Create a basic Bingo chart. Instead of numbers, write in possible treat names, such as, chocolate, Skittles, bubble gum, etc. For each single candy your children have on the chart, they get an allergy-friendly small treat they can enjoy. If they get a Bingo, they get a bigger mystery prize. Game #3: House Points For every house your children are able to successfully trick-or-treat at, they get a point. The more houses they get, the more points they get. Similar to Candy Weigh-In, the prize is based on a scale of mystery prizes. You can set the prize scale by fives (0-5 points, 5-10 points, 10-15 points, etc.), with bigger prizes as the number increases. Have a Happy, and allergy-free, Halloween!

Justina Bonilla

Receiving Treatment for Oropharyngeal Dysphagia: What to Know

It’s normal for people to experience a temporary difficulty in swallowing when they don’t chew their food thoroughly, and/or eat food too fast. But when swallowing becomes a constant problem, then it can be something more serious, like dysphasia.  Dysphasia usually falls under two major categories: esophageal dysphasia (the feeling of food sticking or getting stuck in the esophagus) and oropharyngeal dysphasia (the throat muscles are too weak to pass food into the esophagus). Unfortunately, there are no official statistics of how many people are affected by it, because it usually is seen as a symptom of another medical condition, instead of being diagnosed on its own. By 16 years old, I had suffered from a series of severe anaphylactic allergic reactions to medication and foods. While in the ER for severe chest pain, which was later diagnosed as acid reflux, I was given a baby dosage of morphine — a medication the ER doctor knew I was allergic to, but still gave me. The allergic reaction I had to the painkiller was so severe, my throat muscles collapsed. Consequently, I couldn’t swallow solid food, just sip thin liquids, like water, Pedialyte and clear soup broths. As a result, I suffered from malnutrition, dehydration and a dramatic weight loss of 60 pounds in four months. I was withering away. My doctors, unable to find a short or long term solution, put me on a routine of multivitamin IV treatments. The IVs barely kept me alive. Mom took me to 17 different ENTs (ears, nose and throat) and a gastric specialist.  The first few doctors thought my swallowing problem was for attention. It’s not that I didn’t want to swallow solid food, I couldn’t swallow. By June of 2006, I was diagnosed with oropharyngeal dysphasia. No one knew how to help me. I was given six months to live. Mom, not wanting to accept my death sentence, frantically searched the internet for answers. She found a medical treatment called EST (electric stem therapy). EST uses electric stimulation to help the throat muscles flex, in order to swallow. Within a few weeks, I started EST at a small pediatric acute care hospital. When this ordeal began, Mom recommended we keep documentation. While Mom kept a folder of all my doctor, specialist and ER visits, I kept a folder of my calorie intake and daily symptoms. Together, we kept a third folder of accumulated medical expenses. This documentation helped me organize my priorities, while it helped my parents budget their financial resources for my treatment and recovery. Since none of my primary care doctors had dealt with oropharyngeal dysphasia before me, the information Mom and I kept helped them track my progresses and regressions. To better assist my doctors, Mom and I did extensive research which taught us about the treatments available for swallowing issues. The research was used by my doctors to treat me and other patients with swallowing issues, more effectively. While the EST treatment did help me regain basic swallowing abilities, I had to deal with other medical problems, such as gastric inflammation, acid reflux and rotting teeth, while discovering other medication and food allergies. This made my recovery much slower. Today, I still have some oropharyngeal dysphasia symptoms, including the inability to swallow pills and eating at a slower pace. My disease has taught me to keep extensive records, research, be my own advocate and most importantly, learn to forgive. At first, I was intimidated to disagree with, or challenge a doctor or specialist’s recommendation or diagnosis. But I had to, if I was going to get the help I needed. For example, I went to a highly respected allergist, who wanted to put me on an opiate painkiller and a dairy protein shake. I had to advocate for myself, telling him I couldn’t take them because of my allergies. After all, no one knew my situation better than I did — I lived with oropharyngeal dysphasia everyday. Annoyed by my questioning, he told me, “Do what you want. But you won’t get better.” I realized I had to look elsewhere for appropriate care. In order for me to progress, I had to forgive those who hurt me. I despised the doctors and specialists whose treatments hurt me, or accused me of faking my illness. In my heart, I felt I could only fully recover if I let go of my ill feelings. By forgiving, I was able to release the resentment that was hurting me. As difficult as oropharyngeal dysphasia has been, I now have a great team or doctors, a specialist and physical therapist I can rely on if I have a relapse with my swallowing. They are my safety net as I pursue my passions and explore life.

Paige Wyant

15 Health Conditions People With Fibromyalgia Were Misdiagnosed With

Although fibromyalgia has its own unique set of diagnostic criteria, many symptoms of fibro may mimic other illnesses. Symptoms such as chronic pain, fatigue or brain fog are common among many chronic illnesses – and in some cases, they can even be a sign of mental illness or acute physical illness. Fibromyalgia doesn’t have one “look,” and it isn’t always obvious when a person has the condition.For that reason, as well as it still not being well recognized, fibromyalgia may often be misdiagnosed as another health condition. It can take weeks, months or even years before a patient and doctor are able to put the pieces together and accurately diagnose fibro.If you are struggling with your health – whether you’re undiagnosed or feel you’ve been misdiagnosed – it can sometimes be helpful to talk with others who have experienced similar symptoms or received the same diagnosis, so that you can ask your doctor questions and have a productive conversation with your medical team. That’s why we asked those in our Mighty community who have been diagnosed with fibromyalgia if they were initially misdiagnosed with another condition. If any of the following experiences sound familiar, hopefully it can either be helpful to you in your health journey or remind you that you’re not alone. Here’s what our community shared with us: “ Took the treatment for multiple sclerosis for a year, $1800 a month, injections every three days. Then my new neurologist (the one who diagnosed me with MS and put me on treatment was on maternity leave) said, ‘The treatment doesn’t work and I know why. You just don’t have MS.’ The fibromyalgia was actually diagnosed by my rheumatologist about two years later.” – Melanie C. “ Post-natal depression twice.” – Kirsty R. “Oddly, I was misdiagnosed with gastric flu. A back and neck injury triggered my fibromyalgia. Along with the intense pain it also caused gastric problems and extreme dizziness, I’m not sure why. I knew something was very wrong but every time I returned to the doctors they told me I had a bad case of gastric flu and I just needed to rest.” – Jo M. “ Depression, and everything else was unconfirmed but I tested for so many things over many years.” – Katie J. “ Complex regional pain syndrome. Then I saw a physician who asked me three questions and shook her head and said, ‘Clearly no one’s listened to you. You have no signs of CRPS.’ Three tears later and bam — fibro diagnosis.” – Zoie S. “ I think everyone who is young can understand this one: Growing pains that lasted too long. The signs that ultimately helped us realize it wasn’t growing pains was… well, I was 17 and if I was getting growing pains at that time there would be a lot of other issues.” – Paige W. “ Rheumatoid arthritis. Turns out the medication didn’t work. Diagnosed with fibromyalgia a year later.” – Nakisha M.A. “ IBS, depression, chronic pain, endometriosis, anxiety, insomnia, (neck strain) actually was degenerative disc disease, arthritis, hypoglycemia, chronic fatigue syndrome… there’s more. I do actually have these, but it literally took 20 years to put it all together as symptoms and not separate illnesses. They together plus some other diagnoses are related to my autoimmune disease and fibromyalgia. Always ask your family doctor to look at everything as a whole. You can’t get proper treatment if your main illness is being ignored.” – Tea M. “ Hypochondria.” – Alexia M. “ I was diagnosed at 16 with pain amplification syndrome before I was finally diagnosed with fibromyalgia at 21. I personally believe that they didn’t want to give me the true diagnosis at 16 because ‘I was so young’ and wasn’t exhibiting enough pain symptoms even though I was extremely fatigued and sensitive to any pressure put on my skin.” – Celeste R. “ They thought I had lupus (got tested twice for it). Turns out it was fibromyalgia and MS.” – Melissa H. “ I was so sick with body aches, pains, fever and a high white blood count, that one of the oncology doctors I worked with thought I had lymphoma. A bowel biopsy finally showed I had a parasite and yeast overgrowth. My fabulous GI doctor figured out on top of that, it was chronic fatigue syndrome and fibromyalgia. It took about six months to sort it out. If I’d listened to the first doctor I went to, who knows how long it would have been before a diagnosis? Being an RN, in this case, saved me from the doctors who just wanted to dismiss another overweight patient with hard to diagnose complaints.” – Colleen S. “ I got misdiagnosed with pre diabetes. I’ve never been overweight. My diet was fine. My symptoms got progressively worse no matter what I did. The severe body aches were the biggest red flag. An endocrinologist confirmed that I had been misdiagnosed.” – Jess N. “I was told I had muscle inflammation at age 16.” – Kirsty S. “ I was first told it was all growing pains and I’d get over as I’d age. Then I was told that it was all in my head, depression and so on, so if I’d fix that it would fix everything. Then I got told I had possible lupus, and then chronic pain syndrome. And finally fibromyalgia.” – Faith M. MORE ABOUT FIBROMYALGIA: Fibromyalgia, a chronic illness with three main symptoms — widespread pain, chronic fatigue and cognitive trouble. Fibromyalgia is a complicated illness that’s not well understood. In the past, it was mischaracterized as a mental health disorder. Even today, some doctors wave off fibro symptoms as being “all in your head.” This isn’t the case. Read The Mighty’s comprehensive guide to fibromyalgia here. Click here to join our fibro community and connect with people who get it.

Paige Wyant

21 Fibromyalgia Symptoms Kids Had That Weren't Just 'Growing Pains'

As a kid, I would lie awake at night crying because my knees ached so much I couldn’t stand it, and the muscles in my legs felt so painfully tight that even resting them on my soft sheets was unbearable. But after visiting countless doctors and enduring months of testing, I was told my legs and knees were in perfectly good shape. “It’s probably just growing pains,” the doctors would say. “Nothing to fuss about.” If you have fibromyalgia, this may sound all too familiar. Many of those with fibro start experiencing signs and symptoms as early as childhood, but the lack of awareness about how fibro and other chronic pain conditions can affect children leads to many doctors brushing off the pain and symptoms a child may be experiencing. Too often it takes years (or even decades) before finding a doctor who really listens and is able to make an accurate diagnosis. The medical community needs to stop dismissing children’s complaints and chalking their symptoms up to simple “growing pains.” So, to better understand what early signs of fibromyalgia can look like for children, we asked our Mighty community to share the fibro symptoms they experienced as children that turned out to be more than just “growing pains.” These symptoms need to be taken seriously. Here’s what our community shared with us: 1. “Severe pain and cramps after P.E. I was always told ‘everyone aches after exercise’ so I grew up thinking everyone felt the same way I did.” – Kai M. 2. “ I experienced extreme fatigue for my age. That was coupled with severe pain across my body, skin and bones. I was also extremely sensitive to pain that would normally barely bother a healthy person. When the other kids in my class were fine playing in P.E., I was mostly unable because my legs hurt like they had bruises across their entire surface. My hands would hurt randomly and my arms felt like I’d been punched in them.” – Mikki I. 3. “ The fibro pressure points. I always had pain when people pressed on those.” – Brittany H. 4. “ Restless legs that had me uncomfortable all through class, pain that kept me up at night shooting through my legs, light and sound sensitivities that were excruciating, and fatigue that had me trailing behind my friends for reasons ‘unknown.’” – Marissa E. 5. “ The sun was so bright that I couldn’t open my eyes. Even indoors.” – Ekka N. 6. “ My ankles always seemed to hurt. I would try out sports and loved the concept but the physical strain didn’t love my young ankles. It was always ‘you’re an old woman, Lex!’ And we all joked about it being growing pains. Depression came along at a very young age as well. Once I was diagnosed at 17, it all came together. I am 19 now and still get the ‘you’re too young to hurt this bad.’” – Alexis Mae G. 7. “ Constant burning and gnawing sensations in my legs, and at times, my arms as well.” – Kyndra E. 8. “Aside from the standard fibro symptoms, big signs for me were: Unusual sensitivity to clothing materials, changes in the weather and weakness relating to physical exertion. I would struggle sitting cross-legged on the floor (which was required in lower schools) and playing outside with the other kids.” – Georgia D. 9. “ Heat intolerance! I have always become irate if I get hot.” – Chelsea M. 10. “ Fatigue. So much fatigue and I wouldn’t understand why. I would get pains in my fingers and legs that felt like I twisted them but I wasn’t even moving. My hands and feet would swell and be painful and I would have no idea why.” – Samantha M. 11. “ Leg pain. People would tell me they were shin splints from cheerleading. I just nodded and agreed. But deep down, I just knew it was something else.” – Christina M. P. 12. “ Not being able to sleep with weight of my right knee on left, feeling like my head was too heavy for my neck.” – Gwen K. 13. “ A feeling somewhere between a foot cramp and a pulled muscle in the soles of my feet. My hip used to lock up or pop which was dismissed as growing pains or ‘one of those things.’ It’s only since being diagnosed at 30 that these things are starting to make sense.” – Sophie R. 14. “ I had a lot of sore throats. Later I had tonsils removed. I have also been diagnosed with Epstein Barr.” – Paulette N. 15. “Fatigue, stomach pain which was put down to hormones or irritable bowel syndrome, aching muscles and joints. Always catching the bugs and getting them worse and longer than those around me. Constantly being asked if I was depressed by my doctor when I was just sick and tired of always feeling sick and tired.” – Julie M. 16. “ I’d be laying flat on my back, and suddenly I couldn’t sit up or move. My whole lower back would be hurting, it’d scare me…” – Amber Y. 17. “ All through my early teens I would get back pain so bad I would curl into the fetal position, everything would go white because the pain was so bad and I couldn’t even call for help.” – Jenny H. 18. “ I had extreme muscle cramps in my lower legs. I chalked it up to my ballet lessons, but after 12 years of dance, it was something I’d never experienced before and should have known something was wrong. My family doctor gave me muscle relaxers and just told me to stretch more.” – Elyse B. 19. “Fatigue. It was much worse once I started my period. I missed a lot of school during those times.” – Vonda M. 20. “A tight squeezing feeling around my limbs that would make me feel lightheaded and like I was going to pass out. Doctors said it was just growing pains and I was being dramatic.” – Emma F. 21. “As a teenager I was required to take gym when I was in high school but simply jumping over obstacles or running easy around a track could result in severely torn quadriceps, hamstrings and debilitating shin splits. It was frustrating. Embarrassing. Worse was most instructors didn’t believe I was in the pain I was experiencing and thought I was faking it. I got yelled at and punished for trying to ‘weasel’ out of the class. Looking back with what I know now, it brings me a level of peace to finally understand. To finally know it wasn’t all in my head.” – Natalie H.

Justina Bonilla

Finding a Cancer Warrior Anthem in Daddy Yankee's 'Yo Contra Ti'

In August of 2017, famous Porto Rican Reggaeton performer Daddy Yankee released a bilingual anthem for those battling cancer, “Yo Contra Ti (I Against You)” in collaboration with The Puerto Rican Symphony Orchestra. Reggaeton is a form of Latin rap that combines hip-hop, Latin and Caribbean music, with lyrics that can be in Spanish and/or in English. To write “Yo Contra Ti”, Daddy Yankee got the source of his inspiration from cancer patients affiliated with SGKPR (the Susan G. Komen Cancer Association, Puerto Rican branch). Daddy Yankee was the 2017 official spokesperson representing “The Race for the Cure, Puerto Rico.” The music video opens with the profile of 30-year-old cancer patient, Jessie Reyes.  She was diagnosed with breast cancer on February 27, 2017. As the chemotherapy begins, Jessie is visibly in pain. But at the end of the therapy, she smiles at the camera to show she is not scared of cancer. Next, the scene jumps to Jessie, who is shown wearing warrior tribal makeup, to represent she is a warrior against cancer. Looking at a blow-up image of her cancer, Jessie is shouting at it, mimicking Daddy Yankee’s lyrics. Other women battling cancer are also shown wearing styles of indigenous warrior makeup. At the end of the video, there is a dedication: “Dedicated to all warriors, who have fought and those who continue to fight the battle.” Daddy Yankee raps in the first-person, describing all the emotions someone feels throughout the cancer process. In the beginning, the lyrics talk about the fear of being diagnosed: “I can hardly control my nerves. I have never in my life been so afraid.”  Then the psychological impact that a cancer diagnosis has on someone: “I have cancer; I stay in limbo, in a trance. In the blink of an eye, my world is an imbalance.” The choice of how to deal with cancer: “In me lies the decision, to be a victim or a warrior in this mission. My mind screams freedom, even if you are in prison.” And finally, the determination to fight cancer: “It’s me against you in this power struggle,” and “You’re not going to beat me, **** cancer.” These lyrics are an emotionally powerful attack on cancer. In the description for “Yo Contra Ti,” Daddy Yankee said he wrote this song, “…because it is against an enemy that we all have directly or indirectly in common. My mission is to shoot the #cancer in order to give strength to all the warriors that are on the battlefield.” And, “There are no words to describe the degree of respect and admiration I have for you.” All profits of the digital downloads of “Yo Contra Ti” go to SGKPR. Cancer has also affected Daddy Yankee’s mother. Before “Yo Contra Ti”, in 2010, Daddy Yankee had cancer as a topic for the music video for the song “La Despedida (The Farwell).” “La Despedida” is about the heartbreak of losing someone you deeply love. The story of the video shows a loved one who has cancer, while also showing him trying to understand and cope with the situation. Sadly, according to SGKPR, every day in Puerto Rico, five women will be diagnosed with cancer. Cancer, according to statistics is the number one cause of death for women. The island, according to the U.S. Census, has a population of just over 3.4 million people (2016), with a female population of 52.4 percent. During the past few years, cancer has hit my family hard. In 2015, Mom was diagnosed with stage two and three liposarcoma cancer. In 2016, I had an aunt diagnosed with ovarian cancer. I also had three loved ones pass away from cancer: a friend, a cousin, and uncle, all within six weeks of each other. As painful as it was just coping with Mom’s cancer, it felt like a knife going into my heart and turning with each new cancer death. It made me even more afraid of losing Mom. I’m grateful to Daddy Yankee, one of my favorite contemporary performers, for his involvement in cancer awareness. After Mom watched “Yo Contra Ti”, she said, “This is the most powerful anti-cancer song I’ve heard. Daddy Yankee’s passion against cancer explodes.” To Daddy Yankee, Mom wanted to say, “I’m a 65 years-old, two-year survivor of one of the rarest abdominal cancers, liposarcoma cancer. Thank you for giving us your enthusiastic encouragement, to beat cancer. God bless you, mijo (a term of endearment).” Gracias, Daddy. Gracias, con todo mi corazon. (Thank you, Daddy.  Thank you, with all of my heart.) We want to hear your story. Become a Mighty contributor here .

Justina Bonilla

Holiday Gift Ideas for a Loved One With Chronic Pain

For those of you who are looking to buy gifts for a loved one with chronic pain, here are some gift ideas from someone with a chronic pain condition (fibromyalgia): 1. Cold weather gifts During cold days, many people with chronic pain tend to feel increased pain. Warm gifts can help to soothe the pain. Heat pads: Heat pads can vary from typical around-the-neck pads to pads with Velcro that can stay in place. If your loved one likes aromatherapy, some pads come with a lavender scent, which can be very relaxing. Soft cuddly blankets: For people like me, when having increased pain, there can also be a heightened sensitivity to texture. A soft snuggly blanket can be used for extra warmth and comfort. 2. Mobility gifts Since chronic pain can make mobility a challenge, these items can help make life a little easier. Electric toothbrush: It’s a great stocking stuffer that requires far less physical effort than a manual toothbrush, with a more thorough clean. Bags with wheels: Everything from insulated bags for groceries to briefcases for work can help make traveling anywhere easier. Extension claws: With a handheld extension claw, your loved one can grab things they dropped, or use it to reach for small items from above that can be difficult to grab. Kitchen electronic appliances: Anything from an egg cooker to an electric toaster oven can help make cooking wholesome food less strenuous to prepare. And when possible, make sure the item is dishwasher safe. 3. Clothing When experiencing more pain, even dressing can be a challenge. These clothing items can help make dressing easier. Tracksuits/yoga clothes : These suits can be worn during painful days, both in and out of the home. Because these suits give me a little more room for flexibility than normal clothes, I find it easier to wear them during medical appointments and physical therapy. Beanie/turban/cap: On the days I have bad fibro flare-ups, putting my hair in a ponytail is painful. So, if I have to go out, I like being able to cover my messy hair with something that can also keep me warm. Soled slippers/orthopedic shoes: Comfortable footwear is a must for chronic pain.  Orthopedic shoes can be used for daily use. When putting on regular shoes is too difficult, soled slippers can be used for both around the house and going out. Compression socks/gloves: Walking or grasping can be challenging during painful days. Compression clothing can make these tasks a little easier. 4. Gift cards While gift cards/certificates are a standard for gifts, the right gift cards/certificates can help tremendously. Pharmacy: Due to the many over-the-counter items we need from the pharmacy to maintain our health, this is always a great gift. Gas: There have been times where I had to cancel a medical appointment because I didn’t have enough gas to get there. With a gas card, I can get to my appointment without worrying if I have enough gas to get there. Massage: For many people with chronic pain, massage therapy helps reduce pain. Before buying the certificate, make sure the facility has a trained massage therapist who is experienced in working with people with chronic pain. Entertainment: Anything from books to movies to music can help us by distracting us from our pain. Spa: Any spa treatment, like a manicure, pedicure or facial, can help us to relax, which can be difficult to do when in pain. Grocery store: Since a special diet is often needed for people with chronic pain conditions, it can get expensive quickly. Before buying a grocery store gift card, make sure you know which store they shop at. 5. Other Help vouchers: When I was little, Mom would make us vouchers we could redeem for favors, like a back rub or a trip to our favorite store. If you have the time, you can make vouchers with redeemable favors, like a ride to the doctor or helping us clean. Because sometimes, the best gift you can give someone with chronic pain is helping us when we are in need. Funny homemade card: My little brother, when he didn’t have money for a gift from the store, would make me a funny card with references to things I like. These cards not only continue to make me laugh, but they also reminded me how much I’m loved and cared for. Things we tend to forget, especially when in pain. Cash: It’s the most flexible gift. Due to the cost of chronic illness, cash can be used to buy or pay for things that are needed to maintain health, like medications or utilities. I hope this list of gift ideas is helpful. Happy shopping! We want to hear your story. Become a Mighty contributor here. Photo via noblige on Getty Images

Justina Bonilla

5 Common Misconceptions About Fibromyalgia

Having fibromyalgia for almost 21 years, I have heard an array of comments about fibromyalgia, from positive to negative. Yet, over the years, I’ve noticed certain comments are reoccurring. While I understand that most people don’t know that much about fibromyalgia, there are still many misconceptions. 1. “You don’t take painkillers, so you must not be in a lot of pain.” As odd as it sounds, I’m allergic to all over-the-counter painkillers, as well as multiple prescription painkillers. I was diagnosed with fibromyalgia before puberty. But, when I began puberty, my pain became unbearable. To deal with the pain, my doctors experimented with multiple treatments plans, with both over-the-counter and prescription painkillers. Eventually, I started to have allergic reactions to these treatments.  They quickly became severe anaphylactic reactions. Because of the multiple serious allergic reactions, I had no choice but to turn to alternative pain treatments. 2. “You don’t look like you’re in that much pain.” Since fibromyalgia patients experience pain on a spectrum, everyone can tolerate a different level of daily pain. Growing up with fibromyalgia and unable to take any painkillers, I grew a custom to tolerate a high level of pain. I had no choice. Though this has helped me to function with high pain levels, it has made it difficult for others to understand my high pain tolerance. This has led others, including doctors, to think that since I’m not bent over in pain and on painkillers, like some fibromyalgia patients, I must not be in a lot of pain – or even have fibromyalgia. Just because I don’t fit the typical appearance of a fibromyalgia patient, that does not mean I’m not in a lot of pain. 3. “If you can dance, then you must not have back issues.” As someone who loves to dance, I was heartbroken when I had to stop dancing altogether because of my fibromyalgia pain. But, through the recommendation of family, I found belly dancing. Since belly dancing focuses on flexibility and is less demanding on your body than other dances, like jazz tap, I can dance and not have to worry about having issues with post-dancing pains. As an added bonus, both my doctors and physical therapists saw it as a great form of exercise for me. Though dancing with back issues can be challenging, that does not always mean you can’t dance at all. 4. “It’s all in your head.” Unfortunately, this is the most common criticism about any invisible illness or chronic illness. Though I’ve grown to accept that not everyone is going to believe that fibromyalgia exists, it only becomes a concern of mine when the comments come from medical professionals. I’ve had pediatricians, pain specialists, and even two school nurses, try to tell me what I felt was not real. This is concerning because it not only delays the correct treatment for someone who needs it, but it also makes the person hesitant to seek proper treatment. It’s bad enough dealing with this as an adult, but it hurts twice as much when you’re a child. You become afraid to speak up about anything in your life, whether it’s your physical pain, or being bullied at school. 5. “You don’t have Fibromyalgia, you have…” This, by far, is the most frustrating comment for me to deal with. It bothers me more than, “It’s all in your head.” While I appreciate anyone who is trying to help me, I don’t like people trying to diagnose me, especially when they have little to no knowledge of my medical history. I’ve had people from a massage therapist to a manicurist try to diagnosis me. The most common illnesses people try to diagnosis me with are lupus, Lyme disease, and arthritis. Despite telling people about the multiple verifications of my fibromyalgia diagnosis, by multiple specialists, including a neurological psychiatrist, and tests (both blood and physical) ruling out other chronic illnesses, many still insist on diagnosing me. While I don’t mind others sharing their similar experiences and/or their loved one’s experiences, I don’t want others to tell me what I do or do not have. While fibromyalgia symptoms can be challenging to cope with, the misconceptions can be far more challenging to deal with. For those of us with fibromyalgia, the best thing that we can do to deal with the misconceptions is to be informed about fibromyalgia. You cannot dispel the fibromyalgia myths if you don’t understand what fibromyalgia is. Though we are not all doctors, we can be informed about what we have and how to help ourselves. Because the best advocate for yourself is you. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: max-kegfire

Justina Bonilla

'We Bare Bears' and Food Allergies

According to FARE (Food Allergy Research and Education), an organization dedicated to food allergy advocacy and education, 15 million Americans have food allergies. With more children being diagnosed with food allergies every year, it’s important for children to learn about food allergies. But, with the majority of food allergy media and education targeted at adults, it can be difficult for children to understand what food allergies are, how they affect someone, and what to do when someone is having an allergic reaction. “We Bare Bears” is a Cartoon Network show created by animator Daniel Chong in 2015. The show follows the adventures of three bear brothers, Grizzly, Panda, and Ice Bear, as they do their best to navigate life through modern San Francisco, interacting with both humans and animals. Panda has a severe peanut allergy. Throughout the show, Panda’s food allergy is both talked about and used as a part of the storyline. “We Bare Bears” handles the issue of food allergies in a serious, yet sincere and simple way that children can understand. In the show, Panda is shown living life with a food allergy. He is able to enjoy food, both at home and in the city, with his brothers. As long as Panda takes the precaution of checking to make sure his food does not have peanuts, he’s good to go. Overall, he is able to enjoy life just like his brothers. But when Panda has been exposed to peanuts, the characters show what to do when someone is having an allergic reaction. In the episode “Panda’s Date,” Panda has an allergic reaction because he unknowingly eats a cookie that contains peanuts at the local farmers market. Lucy, a girl working at the farmers market, is shown using an allergy pen on Panda. She carries an allergy pen because her brother, Clifford, also has a peanut allergy. In a later episode, “Lucy’s Brother,” Panda volunteers to watch Clifford. They both have an allergic reaction due to accidentally being exposed to peanut butter, and they use an allergy pen on each other. This shows how important it is for anyone who has food allergies, who is able to administer an allergy pen, to know how to use it on themselves, or others, in an emergency. As someone with food allergies, I’m grateful to “We Bare Bears” for the addition of food allergies in their show. They are doing a great job in showing a positive example of living with food allergies. Since many children learn through television, especially cartoons, about socially interacting with others, I feel it is also important to expose children to a world that includes food allergies. Thanks to “We Bare Bears,” we are seeing a great attempt to normalize food allergies for children. This can be used as a tool to educate children without food allergies, to give them an understanding of food allergies and compassion for those who have them, while also showing children with food allergies a positive character with the same challenges they face. Though living with a severe food allergy, or multiple food allergies, can be difficult, Panda does not let his allergy stop him from being happy and having adventures. I hope other cartoons and children’s shows will follow “We Bare Bears” example, and either include characters with food allergies or talk about food allergies. Congratulations, “We Bare Bears,” for tackling a difficult subject with such sincerity and creativity. We want to hear your story. Become a Mighty contributor here . Photo source: YouTube video